Sunday, 19 September 2010

As part of the Costello Conference we were very privileged to be invited to the House of Lords to celebrate the launch of the RASopathy Network. It's been discovered that a collection of syndromes, such as Costello (what Lilian has) cardio-facio-cutaneous and Noonans all share the same genetic pathway. By grouping the syndromes together in research and pooling resources more progress can be made into fully understanding them.

Our fancy pants invites to the House of Lords.

On Friday morning everyone got dressed up in "smart casual", tried to eat breakfast without getting eggs down their fronts and then jumped on board a couple of coaches. The traffic into London was okay and we went via Knightsbridge which the non residents of London enjoyed. On arrival at the the Black Rod Gate entrance to Westminster we were ushered through security at a slower pace than the airport - ultra secure! We also found out that Westminster was closed to the public for the day and we were all special guests.

Waiting...still waiting....raining...got there

We all met in Westminster Hall (built 1097) and waited for our tour guides. As Lilian was in her pram and we were special-enough guests we were taken around the back route to get up the stairs at the back of the Hall. We got to see the real inner workings of Parliament and what terrible taste they have in carpet and wallpaper.

Apparently a good tennis court for the King.

The tour itself was rather good and as we were one of the few groups to be there waiting was kept to a minimum (Mette went with her mum a while back and said it was really busy). Lilian was very good throughout and either slept or was carried by me. However she showed her punk ethic and performed a dirty protest when we were shown the House of Commons. I doubt many people can claim to have had their nappies changed behind the Speaker Chair! And no we didn't out the dirty nappy in the dispatches box. Good idea though.

Just behind here to the right.

The reception itself was excellent and it was the best afternoon tea I ever had. Lovely the tiny cakes, scones and sandwiches. It was very interesting to hear all the different speeches and it gives us hope that centralized / specialised care for rare syndromes might exist in the future and that there is as possibility of treatments in the future.

The picture on the left is of Lilian and her Australia friend Nicola plus her mum and dad.

The reception was held in the Cholmondeley Room in the House of Lords. If you look at Westminster from the South side of the river you can see two "tents". One with a green striped roof to represent the Commons and a red one for the Lords; we were in the red one.

The two tents.

It was strange to be this side of the fence. Lilian regularly attends the hospital (St Thomas') that's opposite Westminster. Mette had to stay a couple of nights there herself and had a room that overlooked the scene we were attending.

Sunday, 5 September 2010

Lilian and her Danish cousin Josefine. Since the NG Tube has gone Lilian has started to smile a lot more. We get big smiles with gums first thing in the morning and she has started to giggle when something fun happens.

Lilian lying in her bed. Since the NG Tube has gone she is a lot more interested in exploring and eating her fingers and toys.

Lilian having fun with grandma

Lilian and daddy relaxing in the couch . She is wearing her new outfit from auntie Vibeke.

Lilian laughing at mummy not knowing how to work the camera.

Lilian is dressed up for going to the woods with mummy and daddy. The outfit is from auntie Vibeke.

Picture of Mummy, daddy and Lilian on the train up to London Bridge.

Lilian loves going on the train its soooooo exciting. We tried to get her to look at the camera but she was way too busy looking at other things and she did not have time to pose for the camera.